“Hi! My name`s Bartuś. I was born in August 2007 and I suffer from Spinal Muscular Atrophy. It is a fatal genetic disease that destroys children`s muscular and respiratory strength, leading to a lack of ability and independency, and eventually to death by suffocation.

I was born healthy but when I was 7 months old, doctors diagnosed SMA. From that moment, I have been under a regime of systematic rehabilitation. The aim of the rehabilitation exercises is to delay disease`s progress and to keep my muscles in good condition. Giving it up may lead to the gradual, and progressive weakness of my leg and hand` muscles, and also those responsible for breathing and downing what will lead to respiratory and esophageal distress.

I cannot walk or sit independently, and I am being ventilated with the use of a respirator for 9 hours every day. It was not so long that the disease from which I suffer became terminal. The only medicine available was the rehabilitation regime, in order to delay its progress. However, recently a glimmer of hope has appeared – the medicine Nusinersen, which has been successful in clinical trials. It is possible that I could be treated with this medicine going forward but I realize that it is very expensive and unfortunately my family cannot afford it. Worse still, my family can no longer afford to pay for any further rehabilitation. For this reason, I have nowhere else to turn and would ask you for help. My only hope is that I can continue with the rehabilitation until the day when I can find a means to obtain the medicine I need. Maybe you could help my family and me?”